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19 September 2017

No, that title isn't a typo. I really did wait 7 years between neuro appointments. The last time we went it was a joke (Dr said stem cells aren't helpful, it was a shame Liam is blind, said if he had ataxia CP it was the worst he's ever seen, blah blah- I mean he was older than America so I just uh huhed him at every turn) and other than giving us a new med to try it wasn't a helpful or productive appointment. After finding out the medicine had some pretty serious side effects I never even put Liam on it.

Fast forward to this summer. Liam's weird jaw issue has not abated in the least. Some days he's great and other days it's a non stop battle of forcing his jaw shut against him cocking it open and gasping for air. So, we decided to see a new neuro and prayed there was something that could help Liam because baclofen isn't cutting it. Maybe he needs a higher dose? I dunno but that's a different Dr, so off to Chapel Hill we went.

Three hours of driving, with two of them spent listening to Liam cry, we arrived. I hate that drive. Anyway, got called back pretty quickly and to my utter horror, the exact same neuro walked in the door from 7 years ago. Now he's older than dirt. My jaw dropped open the moment I saw him and I turned to my mom so he wouldn't see me gaping at my horrible luck.

He grinned and said hi and asked me how the medicine worked all those years ago. I told him I wouldn't know because we never used it and honestly, if we had, I've had too many sleepless nights since then to remember if this particular one worked well or not. He did spend a lot of time learning about Liam and how he is doing in school and with his eye gaze and spent a lot of time playing with Liam's sweaty hands. He asked if we knew what kind of cerebral palsy Liam has and I told him he told me years go that he felt Liam has choreoathetoid CP. Or it could be a really bad worst case scenario ataxia. He was playing with Liam's hands at the time and said his lovely loose hands and free movements of them showed to him that Liam has choreoathetoid. I asked him how many kids he's seen like that and he said 4-5. It's not very common and it's stupid hard to treat. Stupid hard.

He mentioned the medicine again, levodopa, which is a Parkinson's med, and felt it was worth a try. He said Liam has damage to his basal ganglia (that has never been shown in his MRI) and that that has caused Liam's rare form of CP. He said some kids with different disorders that affect the basal ganglia learn to walk after going on this med (that will never happen for Liam) and it could really help with his extra movements. He also mentioned a patch to help for the days Liam likes to push all his saliva out of his mouth instead of swallowing it. Love those days.

I decided to give them a try and he went out to get the rx. Ten minutes later he still wasn't back. I go out in the hall to find him and one of the nurses asked me what I need. I tell her I'm looking for the Dr and another nurse said she heard him in his office dictating notes. I cried WHAT a little loudly and the ladies started laughing. I told them I hadn't been back in 7 years because I was hoping that Dr had retired. They laughed even harder and said they have heard that before and others were wishing for the same thing. One of them went to track him down and another 5 minutes later he came back with the rx. As he walked in the door he told my mom she had come with me the last time (good memory) and then asks me if I want a business card. I said sure and then he hands one to my mom saying she could have one too since she came with me, like he was handing out lollipops for good patients. He left and we walked out the door laughing.

I couldn't be angry. Frustrated yes, but not angry. I should have checked to see if it was the same Dr seeing Liam, so that is all on me. I had assumed he's retired. I'm not kidding he's OLD. I was hoping for young fresh eyes on Liam but maybe that will happen next time. I did feel the appointment was useful as we had two new meds to try. He said we would know right away if the levodopa would help and I'll leave that for another post. ;)

07 September 2017

I mentioned in my previous post about using CBD oil for Liam and I wanted to elaborate a bit more on how that came about.

Being in the world of special needs for 10 years now, I have seen and heard of many "out-of-the-box" methods for helping children and adults. We've partaken in several of those alternative treatments (stem cells, HBOT, ABM, etc) and I had seen friends using cannabis oil and even medical marijuana to help their children for many varying needs. I also have a friend who moved to Colorado years ago to make CBD oil for cancer patients, children with terminal diagnoses, and various other diseases/disorders. So, all that to say, cannabis was not new to me in regards to it's health benefits for a wide range of issues.

This past year a friend, whose daughter suffers from seizures, started posting on Facebook about how her daughter was now seizure free after using CBD oil and she had found a company that made the best oil on the planet due to its delivery system. I was intrigued but had too many other irons in the fire to check into it. But when I finally did...well, I just wish I had looked into it sooner! Did you know this plant has been used medicinally for thousands of years?!

My friend started her daughter on CBD oil at the recommendation of her neurologist. And what she witnessed happen with her daughter made her a believer in it and now an advocate.

CBD oil is not marijuana. There is a lot of misinformation on CBD (stands for cannabis) and I have a great Facebook page devoted to articles from pubmed.org, studies, doctor sites, and more that relay information showing just how beneficial this amazing plant is. It is non-toxic, it is food, and is one of the most important discoveries of the 21st century in terms of what it can do for you. Did you know our bodies have an endocannabinoid system of receptors?

When I googled CBD oil and the benefits there were a million hits. I couldn't believe what I was learning. I knew we needed to try it after I saw what all CBD helps with. I purchased some bottles of oil from my friend and started two of my kids on it right away, each one for a different reason.

One of my daughters has anxiety and was taking a well known big pharma drug to help with it. I told her to start taking the CBD oil and to let me know if she noticed anything. After a week she came to me and said her head felt clearer. She didn't have that fog that normally hung around in her head. She said it was hard to explain but that she felt calmer in her own skin, if that made sense, and she wasn't taking her RX drug anymore. I was so excited to hear that! I didn't even know that the RX med was making her feel foggy inside, just that it was helping with her anxiety. While it helped with anxiety yes, it made her feel weird and not herself. Not good! And I'd had no idea!

I also put Liam on the oil at the same time. I have to preface his story with an update of the last year. After Liam's osteotomies (one of his legs isn't right after all we went through), Liam has struggled to use his legs properly. He spent months not moving his legs at all in fear of the pain. When he did finally start to move them, he would get them stuck in position and couldn't get out of it. And I'm talking a simple movement of bending his knees and pulling his legs up. He couldn't put them back down. He would cry and we would have to put his legs down. Not only would this go on during the day but it went on at night as well. I'd be sound asleep only to wake up to Liam crying because his legs were stuck. I called this last year the year of no sleep. Many nights I was up 8-10 times helping to position him and comfort him from the pain.

Again, after researching the benefits of CBD oil, and seeing many parents using it for not only sleep issues but for pain, I knew Liam needed to try it.

I'm not kidding, the second night on it he slept soundly through the night. Then the third and the fourth. I couldn't believe it! Liam hadn't slept two nights in a row in over a year and now on cannabis oil, he was sleeping like a rock! I was sold. He is no longer in pain, he sleeps, and he no longer gets his legs stuck in position! I noticed after Liam's first full month on the CBD oil he could bend and straighten his legs with out help from us! This was huge!

I am now an affiliate for the company and it was honestly a no brainer for me. I knew we would continue to use the oil, I knew how beneficial it was for so many things, and they have the best CBD oil in the market, hands down.

Why is theirs the best? It's nanoemulsified. It's a nanenhanced liposomal solution so when you put the oil under your tongue it is literally hitting your body in the cells within 30 seconds because it's in nanoparticles. All the others on the market do not have small enough particles to enter into your blood stream. You can put it under your tongue but you still have to swallow it and digest it to get the benefits. And we all know stomach acid is for breaking down what enters it. It breaks down the cannabis and by the time your body gets it, you are only getting maybe 15-20% of the CBD. Also, this CBD oil is made from the stalk and stems. Most of the CBD on the market is made from seed and with no regulation on what is being produced, you can be purchasing oil that is cut with something else.

All that to say, I've done a lot of research, have been in this world for a long time now, and have found this companies oil to be the best. I paid a $39 fee to become a distributor. That fee paid for itself the first time I bought a bottle because I got the affiliate pricing instead of retail. Think of Young Living and their marketing strategy. What better way to introduce to people the health benefits of CBD oil than by getting it into the hands of as many people as possible through network marketing. I am so thankful I made the $39 leap! I get to help others get healthy, watch people get off of big pharma meds that only mask the problems, and see others create some income on the side as well. It's a win-win for me.

If you are interested in learning more, send me a message and I'll send you a link! Or if you want to join our Facebook group with loads of info, or to purchase a bottle, just drop me a line and I'll get back to you. Because we don't want the FDA stepping on our toes, we can not make any claims to treatments, healing, curing, or diagnosing, which is why I don't name the company publicly. However, do some research, check out the studies, and find out how amazing this plant is for you! You might be surprised to learn cannabis is what your body has been needing and you didn't even know it!

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This blog has journaled the fallout of giving birth to a micropreemie & how it's affected everything in our life from marriage & family, to friends & church & beyond. Liam's early arrival gave him a list of diagnoses like CP, CVI, & ROP. His most impacting special needs are his mixed tone ataxic/athetoid-like cerebral palsy & vision issues. He's non-verbal but teaches us all. Follow along as we try to live this crazy normal, knowing God is the author and he isn't finished writing this story.